Small cell lung cancer

[JPotter42]

Hi everyone,

My dad was diagnosed with 3b SCLC in December, with a small tumour in the lung and 1 lymph node involvement. No mets. He has responded fabulously well to Chemo and radio. Having had his first scan following treatment, his tumour can no longer be seen and his node is now normal size.

Please does anyone have any positive stories for Small cell as it seems all research studies and stats seem to be all on non small cell. I was told yesterday that immunotherapy, should we need further treatment in the future isn’t really beneficial for small cell.

Many thanks

[CherylC-J]

Hi my brother aged 44 at the time was diagnosed with SCLC with mets to the liver in October 2019 was told 3 months to live without treatment and a maximum of 18 months with. He had 6 rounds of chemo and then radiotherapy which ended February 2020. His cancer is dormant and can no longer be seen on x-ray. He is doing fine apart from extreme temperatures affect his breathing. I lost my husband in 2017 to NSCLC who died within a year of diagnosis. So I didn’t have much hope for my brother but have been overjoyed with his treatment and results. Hope your Dad continues to have fabulous results and stay well x

[JPotter42 in reply to CherylC-J]

Sorry to hear of your husband, your brother sounds like he’s doing so well, long may it continue!

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

HI JPotter42

Welcome to the forum, and so sorry to hear about your Dad, it is good to hear that he has responded well to his treatment.

I have placed some links below of the ongoing trials for small cell lung cancer that you may be interested in from Cancer Research UK:

cancerresearchuk.org/about-...

and from the NHS 'be part of research':

bepartofresearch.nihr.ac.uk/

You can browse all clinical trials through this link from Cancer Research UK:

cancerresearchuk.org/about-...

I have included our booklet on small cell lung cancer, which you or your Dad may have already seen but just in case: roycastle.org/app/uploads/2...

Hope you hear from others on the forum who will support and encourage you.

If there is anything you would like to discuss you can either email us at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Popmacca]

I was diagnosed with SCLC that had spread to various places including bones in Aug 2020, have been on immunotherapy and it seems to be doing me some good according to my scans.

[JPotter42 in reply to Popmacca]

Thanks for replying, sound like immunotherapy is working well for you. Keep up the fight, thanks for replying. Take care

[AnnW1]

Hi. My mother was diagnosed with sclc in May 2016 - had chemo and radiotherapy. No treatment since August 2016, no change during this time, still visible on xrays but seems to be dormant. Alot of the stats out there are outdated. There is always hope when at the beginning it does not seem the case. Keep fighting!

[JPotter42 in reply to AnnW1]

This is so good to hear, sound like your mum is a fighter. Amazing stats in itself, thank you!!!

[Sixtygirl]

Hi jotter I have small cell lung cancer and had 4 treatment of chemotherapy and 15 days of radiation. With appointment with oncologist she told me she could not see anymore cancer and it was 7cm I've just finished my radiation so just got to find out in July after my next scan how things are I'm feeling positive my oncologist was so surprised with my results. So I'm good at the moment. I'm so pleased your Dad is doing well it is good to hear such positive news. Take care.

[JPotter42 in reply to Sixtygirl]

Sounds like your doing amazing! It’s great to hear your good news

[Hidden in reply to Sixtygirl]

Hi, your story gives me hope, I’m so frightened, I’m 66 and by accident a 5cm mass was picked up on my lung while they were investigating my diverticulitis. Had PET scan, now bronchoscopy on Monday, they say it’s contained in lung, I’m so scared I won’t be here for my son’s wedding in 6 weeks. Just really want someone to say it will be ok. I cycle every day, so really surprised when this was found, no symptoms, just shoulder pain. I’m thinking of you.

[Poodlie in reply to Hidden]

Hi Loimie, Sorry late reply, but been on holiday. Like you my cancer was 5cm and was discovered during routine xray. So scary but I had top part of lung removed and didn't need any further treatment. That was March 2020 and am doing great, feel normal again. Waiting on results is the worst part. Is hard not to think the worst but any questions I had Macmillan nurse was always there to help. Hoping you have had your results now and if I can help in any way am happy to.

[Hidden in reply to Poodlie]

Thanks Poodlie, yes it’s the waiting. It’s all strange really the bronchoscope was negative for cancer, but the PET scan lit it up and lymph nodes around lung, they said it’s in a tiny vertebrae and slightly in my hip. It’s odd because again nuclear scan which I have for routine osteoporosis check showed no abnormalities! Went for lung biopsy and wouldn’t do it because I have a nickel allergy, they said the needle was nickel, so again another delay. I’m really really happy for you, that they could remove it, they said they can’t do that with mine, I’m wondering why not! Can I ask was yours contained in lung or spread. I wish you all the very very best. Thanks for your reply.

[Poodlie in reply to Hidden]

Hi Loime, All the waiting is so stressful. I am sorry you are still waiting for your final results. I wasn't told anything until all results were in either, including lymph node biopsies from chest. Was really lucky they managed to remove everything and removed suspect lymph nodes just in case. Hoping you hear about your results soon and get started with treatment. Try not to worry, everyone is different. There are so many different treatments now. Surgery isn't always best option. Please get in touch if you need to chat and will be thinking of you.

[JanetteR57 in reply to Hidden]

Surgery is often used for earlier stage cancers if they can be reached but sometimes tumours hide behind the heart or other structures deemed too risky to operate or the patient's health may be compromised with other conditions or there may already be a spread via lymph to other organs. My 7cm tumour (non small cell) was removed in Dec 2010 and I was back at work and swimming by the end of March 2011. I've been involved in lung cancer research since late 2013 and there have been so many breakthroughs in lung cancer treatments of all types but as you say most of the progress has been in non small cell when mutations they found could be targeted with new agents but then along came immunotherapy. surgery and radiotherapy have also changed with most surgery being keyhole now in the UK and a type of radiotherapy developed called SABR (cyber knife) which ablates lesions and often produces excellent results. Being involved has helped me understand the reasons why the statistics that dominate the internet are outdated and inaccurate - several studies are still ongoing for lung cancers and new ones being started all the time, often exploring combinations of treatments - different agents, doses or orders of treatment to find improvements.... hope you get a treatment plan soon as that will make all the difference to your peace of mind.... good luck.

[Sixtygirl in reply to Hidden]

Hi how are you was wondering how things are sending hugs

[SuzyB24]

we are in the same boat